Found this poem on the internet and I think it says it all for us heart mums:

Poem from a "Heart Mom"

You passed me in the shopping mall...(You read my faded tee)

You tapped me on the shoulder...Then asked...`"What's a CHD?"

I could quote terminology...There's stats that I could give...

But I would rather share with you...A mother's perspective.

What is it like to have a child with a CHD?

It's Lasix,aspirin,Captopril....

It's wondering...Lord what's your will?...

It's monitors and oxygen tanks...

It's a constant reminder...to always give thanks...

It's feeding time, calories, needed weight gain...

It's the drama of eating...and yes it's insane!

It's the first time I held her...(I'd waited so long)

It's knowing that I need...to help her grow strong...

It's making a hospital...home for a while...

It's seeing my reward...in every smile.

It's checking her stats...as the monitors are beeping...

It's knowing that there... is just no time for sleeping...

It's caths, x-ays and boo boos to kiss...

It's normalcy...I sometimes miss...

It's asking...do her lips look blue?

It's cringing inside... at what she's been through.

It's dozens of calls to her pediatrician...(He knows me by name...I'm a mom on a mission).

It's winters homebound...and hand sanitizer...

It's knowing this journey...has made me much wiser.

It's watching her sleeping...her breathing is steady...

It's surgery day...and I'll never be ready.

It's handing her over...( I'm still not prepared...)

It's knowing that her heart... must be repaired...

It's waiting for news...on that long stressful day...

It's ...praying...it's hoping...that she'll be okay.

It's the wonderful friends... with whom I've connected...

It's the bond that we share...it was so unexpected...

It's that long faded scar... down my child's small chest...

It's touching it gently...and knowing we're blessed...

It's watching her chasing...a small butterfly...

It's the moment I realized...I've stopped asking...why?

It's the snowflakes that fall...on a cold winter's day...(They remind me of those...who aren't with us today)

It's a brave little girl...who loved her sweet Pinky...Or a special heart bear...or her beloved little binky....

It's the need to remember...we're all in this plight....

It's their lives that remind us... we still need to fight!

It's in pushing ahead amidst every sorrow...

It is finding the strength to have hope for tomorrow.